The Nightmare before the Nightmare

I’ve never been too good at catching people’s attention. Never been a “you had me at hello” kind of girl so I’m hoping the irony of this catches your attention to read further. I’m no good at making an impression, but here goes.

Hello, hi. My name’s Azreen, I’m 21, and I am a cancer patient. Phew! Still interested? I have something called Ewing’s Sarcoma. Ewing's Sarcoma is a very rare and aggressive primary bone cancer. My original tumour started at the very tip of my sacrum, to you and I that’s the tailbone. Ewing’s has a mind of its own and can also travel to soft tissue hence it was also found in my right lung. My journey to diagnosis was a whole mission on its own so I’ll start with that.

My case was not unique in the sense that I was misdiagnosed multiple times before I finally got to hear the “C-word”. The reason being is like I stated above, it’s a rare cancer and hard to catch. It took nine months from the start of my symptoms before it was caught, and in all honesty, it was a relief.

October 2013 - February 2014:

I remember the very first occurrence. I woke up with a disturbing tingling kind of pain at my tailbone. It wasn’t terribly painful but it was enough to keep me up. This was the first of MANY sleepless nights. A characteristic sign of Ewing’s Sarcoma is that the pain is worse at night. Why? I don’t know, perhaps it just likes being as awkward as possible. After an X-ray and a few weeks of physiotherapy it was evident that the pain was only escalating. I was in my retake year of A-Levels and I was determined to come out with amazing results! But soon enough I was unable to sit, being on Tramadol, (one notch down from Morphine) meant the drowsiness had me falling asleep everywhere, in class, on the bus home, and when I got home, only to wake up with pain again.

I went to my GP multiple times, had physio, went to specialists to find out why I was in so much pain. I dragged myself through each day wondering whether this is how I would live out the rest of my years, wondering if I would ever get used to the pain and wondering if this is what it felt like to be dying.

Each study session consisted of countless trips downstairs to reheat my hot water bottle, in the hope that the heat would provide some kind of comfort. As hard as I tried, I couldn't sit up and study. My work as a carer was becoming more and more difficult as the weeks passed till I eventually quit.

My anxiety grew as more problems began to surface. What was happening to me? Why was I in pain? I had reached a point where I could no longer lay on my back or side, I either slept on my front, or not at all. Even if I tried my best, I couldn't describe it. Like people say with childbirth, it's an indescribable pain, and when it’s over you can never remember it. Such is the case with me. I remember being in agony, but I could never replicate it in my head. It is better that way.

March 2014 – July 2014:

I was seeing a new physiotherapist in March who wanted to rule out any red flags. So she sent me for an MRI scan. I remember changing into the crisp white gown and walking into the scanning room. I looked at the long narrow tube and breathed. I was never claustrophobic anyway. Problems arose when I was told to lay flat on my back. On my back? Did this radiographer have any idea how painful this was for me? My scan had to be stopped and started three times because of how much I was squirming, what did they expect? An hour later I was out and in new pain territories. It's a deep bone pain, a constant heavy pain. It was a kind of pain that paralyses every other part of your body. As of that day my condition only deteriorated. Even today, I don’t know how I got through those months. I take comfort in knowing they’re over.

The MRI scan result was exactly what I was dreading. “Your scan is normal, no trapped nerves, and no reason to worry. You have loose ligaments which you can strengthen with Pilates. You’re okay.”

I’m okay? What do you mean I’m okay? Am I imagining this pain?! You’re telling me I have nothing to worry about? You’d think I was crazy for being disappointed that nothing came out in my scan, but by then I had suffered so much that I was ready for anything to take the pain away.

Day by day I got worse. I had signs of a urine infection, but no actual infection, I wasn’t emptying my stomach, I was throwing up and no longer eating, I lost 10kg’s of weight and dropped down to a dangerous 32kg. By May 2014 I couldn’t stand for longer than five minutes without being dragged back down to the floor by a strong heavy pain in my back. I would scream, and scream, but people around me thought I was crazy and exaggerating my pain.

By now the kettle was upstairs in my room which I was refilling my hot water bottle with every hour in a frustrating attempt to lessen the pain but to no avail. I had exams and was disappointed at myself for not studying, but how could I? I could no longer physically sit up and the pain was so intense that I couldn’t focus. I was given permission to get up and walk whenever I feel pain during the exams, but by then even that didn’t help, by then even standing or lying down didn't lessen the pain.

If you ask me what the hardest part of this was the uncertainty. Not knowing why I was in pain was scarier than the pain itself. Being looked in the eye by my parents and every medical professional from GP’s to Osteopaths and Rheumatologists and being told “there’s nothing wrong with you” or “we didn’t find anything” had me on my way to believing I was crazy. I was rushed to A&E one night in June with my stomach the size of a basketball, and hard as a rock with no sensation from pelvis down. I was assured, there is no way I’m okay. There is no way I am imagining this because even my mum had seen the effects of the cancer showing up outside my body. But as usual, I got sent home, this time with thyroid tablets. What?? How does that make sense? … HOW DOES PAIN AT A TAILBONE LINK TO THYROID. HOW?!

Now, a week later I found myself in a different A&E. It was further out, but I needed to see someone different. After an hours wait, and a two hour examination I finally heard what I needed to hear “you’re not okay. You need to be seen. You need to be treated” no C-word yet. But it was a step in the right direction.

Three weeks in Hillingdon's Maternity ward (they thought I had a gynaecological problem) I entailed a urinary catheter, screaming for liquid morphine every two hours, falling asleep, and waking up from these episodes feeling like I'd been hurled at a brick wall at 100mph. The word Sarcoma was whispered carefully around me, but I was always too drowsy to care enough to find out what it was. My best guess was that it was a type of bone infection (I was close). A PET scan was promptly arranged at another hospital and I was back in my little hospital room after a mental breakdown, a life changing scan, and yet another striking episode of pain.

My first ever clue that I could have cancer was this PET scan. I didn't know what it looked for, all I knew is that everywhere I turned, I saw posters about coping with cancer, hair loss, Macmillan posters. The radiographer assured my frazzled mind that just because I'm here doesn't mean I have cancer, they just want to see what my cells are doing. Of course, I believed him... PET scan done, it was now a wait for results.

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